{"entity":{"id":"idea-moon-patient-held-cancer-record","kind":"idea","name":"A patient-owned, portable complete cancer record in a standard format","aka":[],"tldr":"Your entire cancer history, including scans, pathology, genomics and treatments, lives in a record you control and can share in one click with any hospital, trial or second-opinion service.","summary":"Records are trapped in institutional systems; patients carry paper and CDs to second opinions. The mCODE (minimal Common Oncology Data Elements) FHIR standard now defines the core cancer data set. The proposal is a patient-held record service that pulls mCODE data from every provider under patient consent, stores it under the patient's control, and exposes it to trial-matching, research donation and clinicians the patient chooses. Regulators would require providers to export mCODE on request.","asOf":"2026-09-08","links":[{"label":"mCODE initiative","url":"https://mcodeinitiative.org/"}],"tags":[],"related":[],"cancers":[],"sections":[],"technologies":[],"targets":[],"drugs":[],"companies":["patient-data-vault"],"institutions":[],"pathways":[],"terms":[],"trials":[],"people":[],"bottlenecks":["b-patient-voice","b-data-silos"],"keyPapers":[],"journals":[],"dependsOn":[],"notes":[],"hypothesis":"Patients with portable records obtain second opinions and trial matches faster, experience fewer duplicated tests, and contribute to research at higher rates than those without.","rationale":"Banking and travel solved portability with standards and legal rights of access; oncology has the standard and, in many jurisdictions, the legal right, but no product. The patient is the only actor with a consistent interest in the complete record.","test":"Pilot with three health systems and one trial-matching service: measure completeness of assembled records, time to second opinion, duplicated imaging and consent-to-research rates versus controls.","maturity":"early-clinical","actor":"data","cost":"medium","horizonYears":3},"route":"/ideas/idea-moon-patient-held-cancer-record/","neighbours":{"company":[{"id":"patient-data-vault","kind":"company","name":"Patient Data Vault (data-vault.health)","route":"/companies/patient-data-vault/"}],"bottleneck":[{"id":"b-data-silos","kind":"bottleneck","name":"Data silos","route":"/bottlenecks/b-data-silos/"},{"id":"b-patient-voice","kind":"bottleneck","name":"Patients lack understanding, navigation and agency","route":"/bottlenecks/b-patient-voice/"}]}}